How Fitness Trackers Are Redefining the Experience of Living with Chronic Illness
One of the first major crashes I experienced as a chronically ill person happened on an unusually sunny January day in New York City. It was 2023, and I was riding my bike with a friend, feeling euphoric from the exercise. We’d covered just over 40 miles on mostly flat ground—a longish ride, but not out of the ordinary for me. And that’s when it started. About 15 minutes from my apartment, my body gave out.
Initially, it was just my head—my brain felt hot, ablaze almost, and soon my insides felt the same. As the skin on my arms and face turned red and my limbs grew heavy, I felt bewildered. I was fine just minutes ago, I thought. Tired, yes, but the ride didn’t feel that hard.
“I think I need to stop,” I told my friend. My ability to think had diminished. I drank some water and munched on a snack, attempting to compose myself along the bike path on Eastern Parkway. We lingered there for some time, but my condition didn’t improve. Eventually, we resumed our ride, much slower, back to my apartment. I turned 34 that day, and the most vivid memory I hold is of the time spent in bed afterwards, while my immune system went berserk. My spouse was away in Vancouver, Washington, visiting family, and I was alone. So, I laid there, barely able to move, until the following evening.
Fast forward three years, and I barely crash anymore. I am still chronically ill, grappling with long COVID, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome. This means I must be judicious about how I spend my time and what I eat. Yet, as I write this, I can’t recall the last time I spent an entire day in bed. “Sheer luck” might explain some of my progress, while “privilege” likely covers another aspect. I had access to knowledgeable physicians early on, and my insurance covers most of the crucial medications I take.
Arielle Duhaime-Ross at their home. Photo by Evan Ortiz / The Verge
Part of my recovery stems from an unexpected ally: the fitness tracking devices I intentionally “misuse” on a daily basis. Over the past three years, fitness trackers have enabled me to do the opposite of what they were designed for. I use them to pace—an energy management technique that balances periods of activity with much-needed rest. This strategy is particularly beneficial for those with energy-limiting conditions like mine.
Understanding Pacing as a Strategy
Pacing is about energy conservation, a principle highlighted by Raouf Gharbo, an osteopath specializing in rehabilitation. He often shares a metaphorical framework called “spoon theory,” which suggests that people have a finite, but variable, number of “spoons”—units representing their energy—that they can expend throughout the day. The goal is to avoid running out of spoons by managing them wisely. However, pacing is not inherently a cure or a means to improve one’s overall condition; it simply allows life to be more predictable for those affected by conditions like ME/CFs, fibromyalgia, or even Parkinson’s disease.
Arielle Duhaime-Ross’ Whoop arm band. Arielle uses their health trackers to “pace” and manage their chronic illness. Photo by Evan Ortiz / The Verge
Pacing isn’t easily mastered, and it can be quite taxing as it forces individuals to pay meticulous attention to how their body reacts to even minor activities. It challenges them to embrace patience and say “no” to activities they may enjoy, often requiring assistance when needed. Moreover, conditions can evolve, adding another layer of complexity, where even a weather change can affect energy levels.
Five months after that January bike ride, I had an epiphany. I sifted through my “tech box” filled with unused gadgets and unearthed a Whoop 4.0 band. I had previously set it aside, considering it excessive for my level of activity. However, armed with an official POTS diagnosis, my cardiologist emphasized improving my sleep quality. I began wearing the Whoop band again, initially to analyze my sleeping patterns but ended up deriving much more value from it in managing my chronic illness.
The Role of Trackers in Illness Management
The Whoop band utilizes a feature known as Recovery, which assesses the body’s readiness to perform by considering various metrics: resting heart rate, heart rate variability, skin temperature, and sleep quality. It provides a color-coded recovery score each morning. For typical users, a green recovery day indicates a good time for training, while a yellow day advises moderation.
Arielle Duhaime-Ross checks their Whoop arm band. Photo by Evan Ortiz / The Verge
When I started using the recovery score, I realized its utility in planning my daily activities. A green score suggested I could push myself further; conversely, a yellow score often led to crashes and poor symptoms. The trend was more evident when waking up with a red recovery score, indicating significant exhaustion.
This newfound method offered a way to gauge my available energy at the outset of each day. I quickly learned that monitoring my daily strain score—Whoop’s assessment of cardiovascular and muscular exertion—was integral to avoiding crashes in the subsequent days.
However, it’s crucial to differentiate my use of fitness trackers from conventional fitness goals. For many, health optimization relies on continuous push. Yet for those with energy-limiting conditions, health is viewed as a finite resource, demanding strategic management.
Amid my journey with Whoop, a colleague developed a different tracker specifically tailored for those with chronic illnesses: the Visible band. Aimed at individuals with long COVID, ME/CFS, and other similar conditions, the Visible app illuminates a new horizon in pacing and management.
Visible is a health tracking device designed with illness in mind.
With features like PaceSetter—a system that alerts users when they exceed their energy expenditure and a tagging system to categorize daily tasks—Visible offers a layer of control and insight that standard devices lack. Its design is intentional, focusing on alleviating the mental strain associated with tracking one’s health.
Through my experiences with both Whoop and Visible, I’ve learned invaluable pacing techniques that have positively impacted my condition. The act of pacing itself, even without digital aids, proved to be a learned skill that trickled into my day-to-day routines.
Overcoming Financial Barriers
Despite the profound benefits, barriers exist. Pacing can appear to be a privilege not everyone has access to, often relying on a support system to manage energy levels adequately. Additionally, the financial implications of health tracking devices remain an obstacle for many. Visible is aware of these concerns and aims to make its services more broadly accessible, including exploring potential insurance partnerships.
For those not wishing to invest in devices, free alternatives like MindfulPacer empower users to manage their health by providing essential features, albeit at the cost of requiring manual data entry.
Ultimately, whether assisted by technology or self-managed, pacing is a necessary approach in the face of chronic illness. Whether through deliberate resting or digital tracking, understanding and managing our energy levels is essential for improving our quality of life.
My health continues to improve, but I remain mindful of my pacing strategies. As I navigate daily life without constant tracking, I apply my learned techniques to honor my body’s signals. Observing my own need for reminders further proves how crucial these assistance tools are, whether in gadget form or through interpersonal support.
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